The HFPA is the first initiative of its kind to support the day-to-day management of Heart Failure for patients

It aims to enable discussion of patient needs and represent patient needs in development of healthcare policy

Heart Failure prevalence is set to increase in Ireland in the coming years1

The Heart Failure Patient Alliance (HFPA) was officially launched on Saturday in Galway by Frank Fahy, Mayor of Galway City, at an event attended by more than 100 Heart Failure patients, their carers and clinicians. The HFPA is the first of its kind and aims to build a patient forum to address the dearth of Heart Failure resources nationwide. The initiative is spearheaded by Croí, the Heartbeat Trust and is supported by Novartis Ireland Ltd.

Heart Failure is one of the most prevalent chronic illnesses in the western world, being the most common chronic condition. As a consequence of an ageing population, Heart Failure is set to increase dramatically, leading to an increase in hospitalisations from Heart Failure of more than 50% over the next 25 years.1

The HFPA’s main goals are to facilitate discussion of patient needs in order to help manage their day-to-day living with Heart Failure; to provide education to patients and their carers; to represent patient needs in the development of healthcare policy and Heart Failure initiatives throughout Ireland; to interact with international Heart Failure patient forums on areas of mutual interest and importance and to encourage development of local self-care groups to help patients and carers to manage more day-to-day issues in their illness.

Speakers on the day included Dr Pat Nash, Consultant Cardiologist; Professor Ken McDonald, Consultant Cardiologist, National Clinical Lead for Heart Failure; and Neil Johnson, CEO of Croí, the Galway-based heart and stroke charity. A comprehensive education pack for patients and their carers was launched at the meeting.

Symptoms include severe breathlessness, fatigue from everyday activities including climbing stairs and walking to the shops; sudden weight gain, for example two to three kilograms in a couple of days; swollen ankles and fluid build-up in the lungs and around the body. Alarmingly approximately one in three people mistake Heart Failure symptoms as normal signs of ageing.

Neil Johnson, CEO, Croísaid, “We are delighted to partner with the Heartbeat Trust to give a voice to those living with Heart Failure in Galway and throughout the West of Ireland. We know that the burden of Heart Failure could be significantly reduced through earlier diagnosis and better access to diagnostics.”

“Now that we are officially launched, the Heart Failure Patient Alliance will advocate for greater awareness of the signs and symptoms of Heart Failure as well as better care pathways so that people living with Heart Failure and their carers can enjoy a better quality of life.”

Prof Ken McDonald, medical director of the Heartbeat Trust, said, “Heart Failure is a chronic illness affecting more than 90,000 people in Ireland. Research shows that prevalence will increase which is why it is important now more than ever, that we plan for the future to improve care for Heart Failure patients and their carers. It is fundamentally important to include people living with Heart Failure and their carers in this process. As one of the most prevalent chronic illnesses in the western world, it is astounding that management of the disease is so lacking when it comes to provision of a platform to enable discussion from the patient’s perspective.

“The HFPA will respond to the patient’s needs, and will both drive and support patient involvement at an individual level and at a group level. The Heartbeat Trust and Croí intend that the HFPA resolves the often poor management of this condition and improves resources for Heart Failure patients in communities throughout the country.”

Frank Fahy, Mayor of Galway City, said, “It is fantastic to see the collaboration between Croí and the Heart Beat Trust, working together for the benefit of the Irish people in the fight against Heart Failure. They are working to inform and educate people on how best to live with Heart Failure. To date this has been treated on an individual patient basis, but it is important to include the patient and the carer in this process and to develop a patient voice which is a key aim of the alliance.”

Loretto Callaghan, Managing Director, Novartis Ireland said, “For many patients and their families in Ireland, being diagnosed with Heart Failure is frightening and upsetting. We know that patients who receive good Heart Failure education and support are empowered and informed enough to manage the condition effectively.

“Novartis is proud to support the HFPA and bring awareness and attention to this chronic illness which impacts tens of thousands nationwide.”

About the Heart Failure Patient Alliance
The HFPA is a patient forum to support the management of chronic illness which requires active patient involvement, both at the level of the individual patient as well as at group level, the latter to ensure that the views and needs of the patients and their families are heard and acted on. As one of the most prevalent chronic illnesses in the western world, management of Heart Failure has only addressed patient involvement on an individual case level, and has not to date developed a patient forum to enable discussion of the patients’ perspective. The Heart Failure Patient Alliance is designed to address this deficiency.

Diabetes is one of the world’s fastest growing epidemics with its incidence estimated to exceed 250 million by 2025. In Ireland between 140,000 – 200,000 people suffer with the condition and a further 100,000 – 200,000 are unaware that they have it.

This forthcoming FREE education evening is designed specifically to support people in dealing with the challenges of managing Type 1 Diabetes. It will take place on Monday 16th May from 6.00pm to 9.00pm at the Croí Heart & Stroke Centre, Moyola Lane, Newcastle, Galway. Consultant Physicians, Diabetes Nurse Specialists and Dieticians will be on hand to deliver talks on topics such as:

Rise of Macchines: The Artificial Pancreas

Remembering the Basics of Carbohydrate Counting

Insulin Pumps: Who Benefits?

This collaborative event by Croí, Diabetes Ireland and the Diabetes Unit at Galway University Hospital aims to be very informal, interactive and informative and will be of huge practical benefit to adults of all ages with Type 1 Diabetes. Speakers on the day include Professor Seán Dinneen – Consultant Physician, Dr Derek O’Keeffe – Specialist Registrar in Diabetes, Dr Esther O’Sullivan – Consultant Physician and Rachel Langan – Senior Diabetes Dietitian. The evening will facilitate valuable learning and will also provide an opportunity to meet others suffering with the condition and ask questions to diabetes specialist experts.

Four times World Para Cycling Champion, Eoghan Clifford is lending his support to Croi by participating in this year’s Annual Tour de Lough Corrib Charity Cycle which takes place on Sunday June 12th. Clifford was on hand at the new Corrib Oil Deli in Loughrea this week, to launch this year’s event which is now in its 21st year raising significant fund to support the fight against heart disease & stroke. Local company Corrib Oil is the event’s main sponsor and have been so for the past twenty one years. Supporting sponsors this year include Al Hayes Motors, Caragh Precision and Velocity Cycles Up to 2,000 cyclists are expected to participate in this year’s event which offers cyclists the choice of a 45km or 120km route through scenic Connemara. The route is fully supported with plenty of refreshment stops, lead & sweep vehicles, medical support, on the road repairs & lots of volunteers on hand on the day!

Entry is Free but cyclists are asked to raise as much sponsorship as possible. All cyclists must pre-register online on www.croi.ie/cycle in order to be part of this great event.

Pictured at the launch of the annual ‘Tour de Lough Corrib’ Charity Cycle in aid of Croí the local heart & stroke charity, which takes place on Sunday June 12th. Photo shows (left to right): Neil Johnson Croi; Alice O’Dea and Matt Stafford, Corrib Oil (main sponsors) with World Para Cycling Champion, Eoghan Clifford who is leading this year’s event.

The Heart Failure Patient Alliance, an initiative intended to improve the healthcare needs of people living with heart failure in Ireland as well as their carers, will be launched at the Galway Bay Hotel on 16th April at 10am by Frank Fahy, Mayor of Galway City.

The Heart Failure Patient Alliance aims to represent the voice of Heart Failure Patients in Ireland. The Alliance is a joint initiative by heart failure charity, the Heartbeat Trust, and Croí. Together we intend to mobilise the patient voice to improve the healthcare needs of people living with heart failure as well as the needs of their carers.

The Heart Failure Patient Alliance will be launched in the Galway Bay Hotel on Saturday 16th April at 10.00am by Frank Fahy, Mayor of Galway City. The launch meeting is free to attend and open to people living with heart failure, their family members or carers.

Speakers include heart failure specialist doctors, nurses and physiotherapists including Prof Ken McDonald, Consultant Cardiologist and Clinical Director of the Heartbeat Trust and Dr. Pat Nash, Consultant Cardiologist at Galway University Hospital. Ciara Keane of the Heartbeat Trust and Neil Johnson of Croí, will discuss ‘The Patient Voice’, specifically looking at the ways in which the Heart Failure Alliance can help patients who are currently living with the disease.

Prof Ken McDonald, Consultant Cardiologist and Clinical Director of The Heartbeat Trust, said; “The Heartbeat Trust is dedicated to supporting specialist clinical and research services in heart failure and heart failure prevention in Ireland. The Heartbeat Trust is now delighted to collaborate with Croí in the establishment of the Heart Failure Patient Alliance, the Alliance aims to empower patients living with this chronic condition.”

Neil Johnson, CEO, Croí commented “Croí are delighted to partner with the Heartbeat Trust in uniting the voice of those living with heart failure in Ireland. Heart Failure is a chronic condition, the prevalence of which is set to increase in the coming years. The burden of heart failure could be significantly reduced through earlier diagnosis and better access to diagnostics. The Heart Failure Patient Alliance aims to advocate for greater awareness of the signs and symptoms of heart failure and better care pathways so that people living with heart failure and their carers can enjoy a better quality of life.”

Frank Fahy, Mayor of Galway City, said “There is a lack of awareness surrounding the causes, signs and symptoms of heart failure among the general public. I’m delighted to support the Heart Failure Patient Alliance which will be a vital resource in raising awareness and understanding of this condition and in supporting those affected by it.”

Refreshments and education material will be provided for those in attendance. The meeting is organised by both the Heartbeat Trust and Croí and is supported by Novartis Ireland Ltd.

The ‘Women at Heart’ campaign was created by Croí to educate women on their risk of cardiovascular disease and empower them to make their heart health a priority. Cardiovascular disease is the #1 killer of women in Ireland.